Living at the End of Life: A Hospice Nurse Addresses the Most Common Questions

By Karen Whitley Bell and Charles G Sasser

“Straightforward and empathetic . . . Bell details what to expect in both physical and spiritual terms . . . as well as ways to find closure and cope with loss” (Publishers Weekly, starred review).

As death approaches, both patient and family must cope with grief, pain, and seemingly unanswerable questions. A hospice nurse for more than a decade, Karen Whitley Bell has seen and learned much about these challenges and concerns. In Living at the End of Life, she reminds us that this difficult time also offers an opportunity to explore and rediscover the fuller, richer meaning of life.

Bell has created a comprehensive, insightful guide to every aspect of hospice care and the final stages of life. She discusses the physical, emotional, and spiritual journey a dying person goes through; care-giving during this difficult period; closure, and loss and the lessons it teaches us. Through her warm yet knowledgeable voice, readers get firsthand accounts of experiences in hospice care, making Living at the End of Life accessible, reassuring, and indispensable.

• Language: English
• Publisher: Open Road Integrated Media
• Release date: Jan 4, 2011
• ISBN: 9781402776731

Book preview

Living

at the End of Life

Living

at the End of Life

A Hospice Nurse Addresses the Most Common Questions

Karen Whitley Bell, RN

9781402776731D_0004_002

STERLING and the distinctive Sterling logo are registered trademarks of Sterling Publishing Co., Inc.

Library of Congress Cataloging-in-Publication Data

Bell, Karen Whitley.

Living at the end of life: a hospice nurse addresses the most common questions/

Karen Whitley Bell.

p. cm.

Includes bibliographical references and index.

ISBN 978-1-4027-6838-5 1. Hospice care. 2. Hospice nurses. I. Title.

RT87.T45B45 2009

362.17’56--dc22

2009023570

10 9 8 7 6 5 4 3 2 1

Published by Sterling Publishing Co., Inc.

387 Park Avenue South, New York, NY 10016

© 2010 by Karen Whitley Bell, RN

Distributed in Canada by Sterling Publishing

c/o Canadian Manda Group, 165 Dufferin Street

Toronto, Ontario, Canada M6K 3H6

Distributed in the United Kingdom by GMC Distribution Services

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Distributed in Australia by Capricorn Link (Australia) Pty. Ltd.

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Manufactured in the United States

All rights reserved

Sterling ISBN 978-1-4027-6838-5

For information about custom editions, special sales, premium and

corporate purchases, please contact Sterling Special Sales

Department at 800-805-5489 or [e-mail].

DEDICATION

For All the Families, and For B—

CONTENTS

Chapters can be read in any order, based on your needs. You do not need to read the entire guide. Read only what you feel will be of value to you.

Foreword

Introduction

Part I: What Will Happen? The Spiritual Journey

What Will It Be Like?

An Overview of the End-of-Life Journey

Will I Be Alone?

Will Others Be with You in Your Final Days or Hours?

Will I Choose My Time?

Does the Mind or Spirit Influence When We Pass?

Will I Be Aware?

The Possibility of Consciousness, Even If We’re Not Awake or Responsive

I Had This Dream . . .

A Description of Common Dream Themes

Part II: What Will Happen? The Physical Journey

What Should I Do Now?

Expressing Your Wishes

How to Complete Advance Directive and Medical Power of Attorney Forms

Will I Be in Pain?

How Pain Medication Works

When to Use It

What to Tell Your Doctor

How to Minimize Side Effects

Understanding Common Pain Medication Myths

I Don’t Want to Be a Burden . . .

Ways to View and Cope with Dependence

I Wish I Had More Energy . . .

Tools to Maximize Energy and Mobility

Do I Want to Help Plan My Remembrance Service?

Ways to Explore This Topic with Loved Ones

Part III: Caregiving as a Family: How Do We Manage?

I’ve Never Done This Before . . .

An Overview of Caregiving

What Does Hospice Do?

An Explanation of Services

Why Early Access to Hospice Can Help You and Your Loved Ones

What If We Don’t Have Hospice Care?

Tips for Accessing Resources

Making the Most of Your Visit with Your Doctor

Guidance for Managing Care in a Rural Community

I Can’t Do This Alone . . .

Suggestions to Gather, Organize, and Manage Support from Friends,

Neighbors, and Loved Ones

How Can I Keep Him Safe?

Understanding and Reducing Risks for Both the Individual and Caregiver

How Do I Bring the Bathroom to Him?

Options for Toileting and Bathing

I Don’t Know What to Say . . .

Insights to Achieve a Meaningful Visit

He Doesn’t Want to Eat . . .

Understanding and Adapting to a Changing Appetite

Ideas for Adapting Meal Schedules for People with Memory Impairment

Suggestions for Easy-to-Digest Foods and Beverages

For Loved Ones Who Live Far Away: What Can I Do?

Staying Informed and Supportive

Deciding When to Visit

I’m Exhausted! Exploring Care Settings Outside the Home

Choosing a Care Facility, If Needed, and Paying for Care

Part IV: Closure: Will I Die a Good Death?

I’m Afraid to Lose Control . . .

Examining the Fear of Loss of Control and Discovering Ways

to Achieve Peace

I’m Not Ready . . .

Making the Most of the Time You Have

Is It Too Late to Make Amends?

Achieving Reconciliation, Forgiveness, and Healing

I’m Ready—Why Am I Not Going?

Understanding and Achieving Acceptance and Peace

Why Me? Why Am I Being Punished?

Reconciling Mortality with Your Religious Beliefs

We Always Thought We’d Have More Time . . .

Realizing Dreams and Appreciating the Choices You Have Made

Part V: For Loved Ones and Caregivers: Sharing the Final Days

How Do We Keep Her Comfortable?

Giving Medication When Your Loved One Can No Longer Swallow

Recognizing If Your Loved One Is in Pain

Preventing Discomfort

How Do I Let Go?

Saying Good-bye: Helping Your Loved One Achieve Peace

How Will We Know When the End Is Near?

Changes You May See

Understanding What These Changes Mean

I Want to Be with Her When She Passes . . .

Meeting Your Loved One’s Needs—and Yours—in the Final Days

Ideas to Create a Peaceful Environment

I Want My Last Memory to Be a Good Memory . . .

What to Do at the Time of Death

Ideas for Honoring and Caring for Your Loved One at the Time of Death

Part VI: How Will I Go On? Coping with Loss

I Feel So Alone . . .

An Introduction to Grief and Bereavement

How Are You?

How Love and Loss Shape Who We Are

Part VII: Living

Is There Life after Death?

Does It Influence How I Live Now?

Can I Choose How I Live?

Appendices

Appendix A: Additional Resources

Appendix B: Important Documents to Gather

Appendix C: Common Pain Medications

Appendix D: Supportive Therapies

Acknowledgments

Index

About the Author

c1 FOREWORD c2

FOR MOST OF US, FACING INCURABLE, life-threatening illness in ourselves or a loved one is a terrifying experience. Although we may have considered the possibility, it is not something we can actively plan for, and its effects usually take us by surprise. There are a number of how to books on the market filled with practical hints to guide newcomers encountering life’s final chapter. In the category of end-of-life literature are autobiographies of people stricken with illness, philosophical and spiritual musings, and scientific textbooks. As the population ages and chronic illness becomes more commonplace, self-help survival guides are added to the collection.

Living at the End of Life is much more than a self-help manual. By inserting real-life dialogue into the extensive list of issues to be faced, Karen Whitley Bell places the reader at bedsides during one of the most intimate of life’s dramas. Reading about what others have experienced and the common questions they have asked gives a firsthand feel to the narrative. People grappling with illness and their caregivers often find themselves overwhelmed with questions about a future they are afraid to contemplate, and don’t know how or what to ask. This book asks those questions, and the follow-up answers—provided in the context of discussions among givers and receivers of care—offer reassurance, encouragement, and hope.

The language people use with each other and with their health care professionals about dying often lead to the most intimate and profound of conversations. After nearly thirty years in hospice and palliative care, I continue to be awed by how people facing life-threatening illness describe their plight, as well as both the healing and damaging potential of the language health care professionals choose in end-of-life conversations. A key to excellence in palliative care is the recognition that when it comes to the art of dying, they are the teachers and we the students. Palliative specialists provide expertise in comfort and pain and symptom management, and they receive in return remarkable insights into the illness experience, provided by the only ones who really know what it’s like. We are all wounded in some way and, in the care of those with incurable, terminal illness, the distinction between givers and receivers of care becomes blurred.

Ego chill is a phrase used to describe the shock of realization that our nonexistence is possible. Accompanying the shock is an almost universal desire to cling to life at any cost and to desperately seek, if not a cure, at least a delay to the end of existence. Curative hope describes this all-consuming urge to fight, to resist, to be rescued from, and not to think about, the unthinkable. Although modern medicine is grand, the energy and time invested in curative hope often lead both seekers and providers of health care down paths they, in retrospect, wish they had never chosen.

Making the transition from curative to palliative hope is one of the hardest challenges of life’s final chapter. With palliative hope, the frame of reference shifts from hope for a physical cure to hope for healing, a word that encompasses much more than what happens to the body. In palliative hope, healing—which can take place in the midst of continual physical decline, even unto death—has to do with a restoration of wholeness to mind and spirit and to relationships, as well as a restoration of coherence to one’s life story. Here we were, telling one story with our lives, and along comes this unanticipated and uninvited illness that wrecks the story we were creating for ourselves. Now, in a time frame beyond our control, we have to create a new story, with the illness in it, and decide—here we still have some control—if we will ultimately be defined by the illness or by some greater meaning of our choosing.

Palliative hope is all about that choice. It’s about bringing closure, completing tasks, recognizing that our loved ones can make it without us, and celebrating the gifts we have given and the example we have provided that will help them accomplish this. It’s all about love, forgiveness, saying good-bye, and making sure that any regrets are dealt with. Unfortunately, time constraints in life’s final chapter don’t always provide opportunities for both curative and palliative endeavors. We usually have to choose. This book considers what it might be like to choose palliative hope.

The stories of the various aspects of this experience found here reveal the different ways people and families face their illness, with examples of how these conversations may go and the remarkable healing impact of words carefully chosen. When agendas differ, conflict is common. But when discussion time is allowed for personal values and goals of care to be clarified, as demonstrated in these narratives, tensions quickly dissolve and everyone finds common ground.

People who are dying want, more than anything, to have caregivers who are both loving and competent. Their caregivers want, more than anything, to provide loving, competent care. And their health care professionals seek the skills and insights necessary to provide both state-of-the-art pain and symptom management and to serve as compassionate witnesses to the incredible final chapter they are invited to share. This book has much to offer all three.

—Dr. Charles G. Sasser, MD, FAAHPM, FACP

c1 INTRODUCTION c2

What’s going to happen? How will we manage? There are things I still want to do. I’m afraid . . .

So begins this journey. It is a time of challenge, of concerns, but also an opportunity to explore and rediscover the fuller, richer meaning of life.

This book offers guidance to individuals and their loved ones by sharing the experiences of others who have traveled this extraordinary road. Their stories offer different perspectives, impart knowledge, and reveal possibilities. Their lessons offer the opportunity to discover our own path to cope with decline, realize meaning, attain closure, rediscover hope, and achieve peace.

It also includes suggestions, discussion questions, lists, and other resources to help you and your loved ones develop your own solutions to reflect your unique needs and values.

What does it mean to undertake this journey? You alone can discover that answer. You alone will choose your path.

What This Guide Offers

iw3b Insights into meaning and hope, offered by those who have made this journey

iw3b An understanding of the opportunities and challenges of this time in life

iw3b Practical caregiving instructions

iw3b Insights into emotional and spiritual issues

iw3b Ideas for creating meaningful conversations

iw3b Guidance to address conflict and unresolved issues

iw3b An explanation of common physical changes

iw3b Suggestions to maximize energy and mobility

iw3b Ideas for adapting to a changing appetite

iw3b Information on common pain medications, and guidance for medication management

iw3b An explanation of hospice and the services it offers

iw3b Safety tips

iw3b An exploration of care settings outside the home

iw3b Descriptions of supportive therapies to improve comfort and quality of life

iw3b Suggestions for managing care if hospice service is not available

iw3b Lists of resources for additional information or support

How to Use This Guide

Some chapters address the needs of individuals coping with declining health. Other chapters focus on the challenges faced by loved ones and caregivers. Many chapters offer information that may be helpful to everyone involved in the end of life transition. You do not need to read the entire guide. Read only what you feel will be of value to you.

To locate the information you need, read How This Guide Is Organized below, then turn to the Table of Contents and select the topic of interest to you. Chapters can be read in any order.

Next, read the brief chapter, which explores the practical concerns and emotional factors unique to that issue. In most cases, both must be addressed to achieve a real solution. Then review the list of suggestions, tools, or discussion questions at the end of that chapter to help you develop your own solution.

Explanation of Terms

For each of us, the word family holds a different meaning. In this guide, family applies to whomever you, the reader, define as your family, and may include close friends, a partner, relatives, pets, or other loved ones.

Just as we define our family, we also define our own spirituality. In this guide, spirituality refers to how we view ourselves, our sense of being within a broader context. Regardless of our culture, beliefs, or religious traditions, we ask common questions and encounter common phenomena that may influence our views of our existence. This guide presents an objective account, allowing you to gain insights into these experiences while applying your own beliefs to determine meaning for you.

In keeping with hospice practices, this guide does not advocate any specific religious points of view.

Consciousness can mean both active consciousness, what we commonly think of as being awake, and awareness, which can occur without our being awake.

How This Guide Is Organized

Part I: What Will Happen? The Spiritual Journey

This section offers information that may be helpful to individuals coping with declining health, their loved ones, and caregivers.

In this section you’ll learn about the special awareness, communications, and visions some people experience before passing. Information about these occurrences is offered to help you understand what you may experience, or what your loved ones might witness during your final days. These occurrences happen frequently and are well documented in professional hospice literature. They are consistent in theme, regardless of the cultural, spiritual, or religious practices of those who experience them. They may be the result of the subconscious emerging; they may have a spiritual origin, or they may have other causes. No one knows why they occur, or what they mean. Only you can decide what they might mean for you.

Part II: What Will Happen? The Physical Journey

This section offers information that may be helpful to individuals coping with declining health.

In this section you’ll learn what this journey may be like for you. You’ll learn what physical and emotional changes you may experience, and discover tools to cope with these changes. You’ll also learn about some of the legal and practical issues you and your loved ones may face, and ways to address them. Most chapters are followed by a list of suggestions, tools, or other resources to help you develop a solution that reflects your unique needs and values.

Part III: Caregiving as a Family: How Do We Manage?

This section offers information that may be helpful for loved ones and caregivers. Individuals coping with declining health may find value in some of this material, as well.

In this section you’ll learn how to adapt to physical decline. You’ll find suggestions to maximize mobility, energy, and safety; advice for adapting to a changing appetite; tips for gathering and organizing help; and information about available resources, including hospice. You’ll learn about how to manage communication and minimize conflict within your family. You’ll also find guidance for selecting a care facility, if caregiving at home is no longer possible. Each chapter is followed by extensive checklists and other tools for quick and easy reference.

Part IV: Closure: Will I Die a Good Death?

This section offers information that may be of value to individuals seeking meaning as their life nears its end, and to family members supporting a loved one through this process. Not all chapters will be relevant to your situation, so read only what you feel applies to you.

In this section you’ll explore some of the challenges people may face as they review their life and search for meaning. You’ll discover how others have addressed these issues, and how they resolved them. You’ll find practical tips as well as discussion questions to help you explore your own feelings to achieve resolution, meaning, and peace.

Part V: For Loved Ones and Caregivers: Sharing the Final Days

This section offers information that may be especially helpful for loved ones and caregivers. To better understand and prepare for the issues presented in this section, consider reading these chapters before the final days.

In this section you’ll learn how to care for someone in the final days. You’ll find information about physical changes that may occur, and what these changes mean. You’ll learn how to keep your loved one comfortable, and how to recognize if she’s comfortable, even if she can’t tell you how she feels. You’ll also discover what you can do at the time of passing to honor your loved one and create a special memory, if you choose.

Part VI: How Will I Go On? Coping with Loss

This section offers information that may be helpful to loved ones beginning their grieving process.

This section provides an introduction to the journey of grief, an ever-changing process that each of us experiences in our own way. You’ll learn about common physical and emotional changes you may experience, as well as tools and resources to help you understand and cope.

Part VII: Living

This section offers information that may be helpful to anyone affected by loss, and can be read at any time during this journey.

This section relates some of the remarkable lessons I’ve been offered about life and living from individuals and families who have shared their journey with me. I share their courage, grace, and wisdom with you, in hopes that you, too, will discover your own path to meaning, hope, and peace.

I am grateful to the many families I’ve been privileged to serve and learn from in my fifteen years as a hospice nurse, providing care and support in homes, hospice residences, and hospitals. The events shared in this guide are actual experiences. One chapter, What If We Don’t Have Hospice Care? is a composite of two families’ similar experiences. To respect their privacy, names and other identifying details have been changed.

Nothing worth doing is complete in our lifetime,

Therefore, we are saved by hope.

Nothing true or beautiful or good makes complete sense in any immediate

context of history,

Therefore, we are saved by faith.

Nothing we do, however virtuous, can be achieved alone,

Therefore, we are saved by love.

No virtuous act is ever as virtuous from the standpoint of our friend or

foe as from our own,

Therefore we are saved by the final form of love which is forgiveness.

—Reinhold Niebuhr

PART 1

What Will Happen?

The Spiritual Journey

This section offers information that may be helpful to individuals coping with declining health, their loved ones, and caregivers.

In this section you’ll learn about the special awareness, communications, and visions some people experience before passing. Information about these occurrences is offered to help you understand what you may experience, or what your loved ones might witness during your final days. These occurrences happen frequently and are well documented in professional hospice literature. They are consistent in theme, regardless of the cultural, spiritual, or religious practices of those who experience them. They may be the result of the subconscious emerging; they may have a spiritual origin, or they may have other causes. No one knows why they occur, or what they mean. Only you can decide what they might mean for you.

What Will It Be Like?

An Overview of the End-of-Life Journey

Will I Be Alone?

Will Others Be with You in Your Final Days or Hours?

Will I Choose My Time?

Does the Mind or Spirit Influence When We Pass?

Will I Be Aware?

The Possibility of Consciousness, Even If We’re Not Awake or Responsive

I Had This Dream . . .

A Description of Common Dream Themes

c1 WHAT WILL IT BE LIKE? c2

An Overview of the End-of-Life Journey

Eddie

WHAT WILL IT BE LIKE? EDDIE ASKS, holding my hand.

I gaze at him, looking for signs of fear, but see none. Instead, I see a quiet acceptance, wisdom, and a grace rarely found in this time and culture in which we live. Most of us live our lives in haste, in pursuit of goals, in denial: I must hurry. I must have more. It will not happen to me.

And yet